Giving a Pint-Sized Patient a Big Boost in Vancouver

June 8, 2018 at 8:58 am

Author’s Note: Your share how giving and receiving blood changes your life through many different avenues: on social media, via email and in person. This particular story came about in a more unusual way—through a partnership with Einstein Bros. Bagels. As you might have heard, every Sunday morning we provide free Einstein Bros. egg bagel sandwiches at select Bloodworks Donor Centers. It just so happened that our Einstein Bros. catering liaison, Ben Lepley, has a young son who relies on blood transfusions. Until our Brunch on Bloodworks partnership, Ben had no idea Bloodworks donors supply that lifesaving blood. This is his family’s story.  

For Ben Lepley from La Center, Washington, the scariest part was not knowing what was wrong. His then one-year-old son Frank—a cheerful toddler with feathery blond hair and wide blue eyes—had become lethargic, his face a sick yellowish tinge.

It seemed serious enough that Ben and his wife Nikola drove Frank to Legacy Salmon Creek Medical Center in Vancouver, Washington for a medical examination. “The doctor told us ‘I don’t know what this is. We’ll figure it out but I need you guys to be prepared for news,’” Ben said. “It’s like one of those things you see on TV—they were talking about leukemia, or some of these super scary diseases.”

It wasn’t leukemia, but there was still cause for concern. Frank was diagnosed hemolytic anemia, a rare blood disorder that makes his oxygen-carrying red blood cells self-destruct before their normal lifespan is over. As a result, his heart has to work much harder to spread oxygen through his body, leading to exhaustion, loss of appetite and that tell-tale jaundice facial coloring.

To the Lepley family’s great relief, they learned Frank’s condition was manageable thanks to one key ingredient: blood from local Bloodworks donors. Each month, Nikola takes Frank to Legacy Medical Center for an oxygen level check-up. When his oxygen invariably registers too low, nurses inject a child-sized bag of red blood cells into his tiny arm.

Frank with his sisters Sam (left) and Ana (right).

According to Ben, the effect is almost immediately perceptible. “It makes a huge difference,” he said. “He goes from yellow and lethargic and not wanting to eat to coming home and eating a ton. His color comes back.” While Ben admits Frank is unlikely to ever to bounce off the walls with energy, he notices blood transfusions help bring out his now two-year-old’s joyful, humorous side.

Hemolytic anemia is a challenge, but Ben said he’s grateful for a supportive medical team and generous local blood donors who give Frank a chance at a normal life. “Blood donations support the lives of all sizes of people for all different reasons. It’s impacted my life way more than I ever thought it would.” And that’s one thing he knows for sure.

You can make a difference in the lives of local children like Frank. Sign up to give blood at a Bloodworks location near you, or learn more about our Brunch on Bloodworks Sunday program at our North & Central Seattle, Bellevue, Lynnwood, Tukwila and Federal Way donor centers.

Bloodworks First Person: “I dream about curing hemophilia and owning a coffee shop in the Caribbean.”

June 6, 2018 at 12:42 pm

Welcome to Bloodworks First Person, a series profiling Bloodworks Northwest employees, volunteers and donors by asking them a few questions about their work and lives. Today you’ll meet Dr. Rebecca Kruse-Jarres, medical director of Bloodworks’ Washington Center for Bleeding Disorders which helps patients with hemophilia and Von Willebrand disease be healthy and independent.

Name: Rebecca Kruse-Jarres

Currently, I’m working on… keeping all the balls in the air.

A very dear patient and my wonderful mentor, Cindy Leissinger…sparked my interest in my field.

I chose to come to Bloodworks because… I wanted to work with a patient population and community I care for very much – in an environment filled with curiosity to understand and improve the care for bleeding disorders.

I get most excited about my work when… my patients and team are happy.

If I could tell blood donors one thing, it would be… thank you, thank you, thank you (I guess those are 3 things).

My blood type is… A neg.

On Saturday mornings you can find me… sipping a cup of coffee enjoying the view from my home (if I am fortunate enough to be there and not travelling to a meeting or conference).

I’m currently reading… a medical journal, but can’t wait for the next good book.

When I have an hour of free-time, you’ll find me… What hour of free time?

My secret talent is… Hugs. I love to give hugs

My favorite hobby is… building something and physical activity.

You’ll never find me without… the will to find a silver lining.

The best advice I’ve ever received is… to find a husband that makes you smile.

I dream about one day… curing hemophilia and owning a coffee shop in the Caribbean…or hiking all the trails of Washington…or building bookcases in my living room…or going skiing for a whole month…or sitting in an Airstream in a remote campground sipping coffee with my husband on an early summer morning.

Do you know someone who’s making a difference as a part of the Bloodworks community? Send your suggestions for future Bloodworks First Person profiles to feedback@bloodworksnw.org. 

Molly’s Story: “Without blood, I would not be here.”

May 13, 2018 at 9:05 am

Molly Firth knows her way around health statistics. In fact, with a master’s degree in public health and more than a decade’s experience directing healthcare policy, she’s a verifiable expert. But when it came to her pregnancy with her daughter Clara, she couldn’t have predicted the traumatic turn her labor would take, or her sudden need for blood and expert care.

Fortunately, Molly gave birth at a hospital where Bloodworks Northwest ensured a strong blood supply and clear medical protocols. For many other new mothers in Washington and across the United States, this isn’t the case. Help us give all mothers the care they deserve by making a donation–and keep reading for highlights from Molly’s recent interview on the Bloodworks Happenings podcast.

On her unexpected birth experience: “I went into childbirth thinking that I was going to have a natural delivery, which was hilarious in retrospect because I did not. I immediately had an epidural and I ended up laboring for a really long time.  After about three hours of pushing, the doctor was like ‘You know, baby’s not really dropping, we might need to do a c-section.’  The baby came out–it was a girl–and soon after that, I started feeling a lot of pain. At some point I lost consciousness and woke up the next morning in the ICU very confused.

On waking up in the ICU: “I remember thinking, ‘Why am I in the hospital? Did I have a baby? Was I pregnant?’ I learned that I had lost a lot of blood, I’d had a seven-unit blood transfusion. It was very traumatic and not what I expected. You do not go into childbirth thinking you’re going to wake up in the ICU–you think you’re going to have the experience that everyone has when they get to hold their baby and have skin to skin contact right away.”

On connecting the dots: “I later learned I was bleeding at a rapid rate and the placenta wasn’t coming away from my uterus. What they thought had happened was this condition called placenta accreta which they confirmed in the pathology. If there was not blood there, I would not be here. They were just pumping the blood in and trying to stop it from bleeding out.”

On learning she’s not alone: “I’ve come to find out since that [postpartum hemorrhaging] is actually fairly common–frighteningly common. I learned that about 700-900 women die each year in the U.S. during or soon after childbirth and about 50,000 women a year experience life-threatening complications. That’s kind of a big deal. The scope is just so significant and you don’t expect that in a country like the United States.”

To celebrate Clara’s first birthday, Molly and her family hosted a blood drive. Molly also rolled up her sleeve in honor of the blood that saved her life and continues to help many other new mothers. Like Molly, you never know when you might need blood. This Mother’s Day, make a gift to Bloodworks to ensure the blood and expert care is available for those you love most.

Standing Strong For Diverse Patients

April 26, 2018 at 1:26 am
For Shona Carter from Vancouver, Washington, a shocking diagnosis provides an opportunity to advocate for more diverse blood and bone marrow donors. 

Shona is no stranger to cancer. Her husband was treated for a stomach tumor in 2012. And in 2005, her friend passed away from Acute Myeloid Leukemia, a type of cancer that starts in bone marrow’s blood-forming myeloid cells.

At the time of her friend’s diagnosis, Shona was working as a philanthropy executive in the Bay Area, advocating equal access to education and healthcare, among other causes. Leading a fundraiser for her friend through the Leukemia and Lymphoma Society was a natural extension of her skills. But looking back, Shona is surprised about the one thing she missed.

“Through the whole process, going to gatherings, there was never an emphasis on how people of color have a harder time finding a bone marrow match,” she said. In fact, according to the Be the Match National Donor Marrow Program, “rich heritage, complex tissue types and a smaller pool of potential donors” make it harder for thousands of black and African American patients with life-threatening blood diseases to find a match.

“Rich heritage, complex tissue types and smaller pool of donors make it harder for thousands of black and African American patients to find a match.”

As an African American woman, Shona would become increasingly aware of these odds following her own eerily familiar diagnosis.

***

She’d been tired, but this was different. Sluggish with fatigue, Shona thought “I need to work out more.” But in fall 2017, one gym membership and a personal training session later, she felt worse than before. “The symptoms started feeling like heavy pressure on my heart,” she recalled. “I couldn’t walk up a flight of stairs. Eventually there was some numbness in my fingertips which made me think I was having a heart attack.”

“There was some numbness in my fingertips which made me think I was having a heart attack.”

A blood test at her local hospital revealed two possibilities—one more terrifying than the other: “They told me it was probably anemia, but it could be leukemia.” The hospital staff administered an energy-infusing blood transfusion (“I felt like I could run laps again,” she recalled) and told her to stay the night. The next morning, her diagnosis was confirmed: Acute Myeloid Leukemia, or AML. By December 2017, AML cells had infiltrated Shona’s bone marrow and chemotherapy was imperative.

Through two rounds of chemotherapy, Shona was sustained by 33 units of blood from Bloodworks donors. “After treatment, your blood levels get really low so you’re getting blood transfusions almost every other day,” she noted. Today, she continues to receive monthly blood and platelet transfusions in outpatient care as she waits for the next step in her treatment—a bone marrow transplant through Be the Match.

Joe Wilson signed up new Be the Match bone marrow donors at a blood drive in Shona’s honor.

Shona is uncertain about the future in part because there aren’t enough diverse donors to ensure a perfect bone marrow match—an issue facing diverse patients in the Pacific Northwest and across the country. “There’s less awareness among people of color to think about donating bone marrow,” she explained. A lack of diverse blood donors also affects minority patients like Shona who rely on a steady stream of compatible blood transfusions. For people of color who receive multiple transfusions, the more perfectly matched the blood is to their own blood, the better the medical outcome can be.

“If you’re healthy and you want to make a difference, this takes no money–it just takes willingness to give of your time.”

For now, Shona plans to move ahead with a “half match” obtained through a cord blood or stem cell donation. “It’s thought to have a good chance of success, but to be less effective than an exact bone marrow match,” she said. On a given day, she vacillates between fear and hope. But true to her philanthropic roots, she’s determined to use this experience to encourage more people, especially communities of color, to become involved and be a blood and bone marrow donor. “Get more information,” she said, speaking to potential donors. “If you’re a healthy individual and you want to make a difference, this takes no money–it just takes willingness to give of your time.”

You can help diverse patients like Shona access the care they need. Give blood at a Bloodworks Donor Center near you, add your name to the National Marrow Registry, and let your friends, colleagues and family know about the need for more diverse donors.

A Super Volunteer With a Simple Reason Why

April 20, 2018 at 10:29 am

The room is filled with giddy anticipation. It’s a gathering of Bloodworks Northwest volunteers and employees eagerly awaiting the guest of honor (and, as it happens, birthday lady): Shirley Stubben, a dedicated Bloodworks volunteer for over 25 years.

Eyes whip toward the door each time someone slips in. Finally, it’s the entrance everyone’s been waiting for.

As she crosses the threshold, Shirley grins at familiar faces but then freezes, momentarily flabbergasted by the full scene: flashing cameras, balloons, banners and a buffet spread. “I wasn’t looking for any of this,” she later said with tears in her eyes.

Super woman! Shirley has been a regular volunteer at six local organizations for over 20 years.

Not one to call attention to herself, Shirley’s motivation for volunteering is simple: “It just gives me a good feeling.” Incredibly, Bloodworks is just one of many local organizations to which she has regularly given time for over two decades, including the Arthritis Foundation, West Seattle Food Bank, Washington Talking Book & Braille Library, and Seattle Goodwill. At age 80, she volunteers between 120 and 150 hours each month.

“I’ve been a volunteer for the biggest part of my life,” she said. “It’s so easy to give money, but to donate time and skills to help a nonprofit I think is just the ultimate.”

Bloodworks CEO and President Dr. AuBuchon thanks Shirley for her dedicated service.

A former data security analyst for Washington Mutual Bank, Shirley first heard about Bloodworks through her company’s monthly blood drives. “They needed volunteers to help monitor the donors, so I started volunteering every month,” she said. Soon, she was recruiting co-workers to pitch in and contributing extra hours at Bloodworks’ Seattle Central Donor Center every Wednesday night.

After almost 20 years as a donor monitor and registrar, Shirley was itching to put some of her other skills to use. “Someone said, ‘Well, the Bloodworks Cord Blood Program needs help,'” she recalled. She started out helping the Cord Blood Program send thank you letters, file, and complete other small projects. Now, she’s back to her data roots, entering cord blood donor information and running reports on the new mothers’ lifesaving gifts.

According to Shirley, the payoff doesn’t only come in the form of balloons and bouquets. “I get gratification when I know that what I do is important to the group that I’m doing it for,” she said. “I like to know what I’m doing is benefiting the department and in turn the organization and in turn the people who benefit from Bloodworks.”

Shirley’s reason for giving is simple: “It gives me a good feeling.”

Speaking of Bloodworks beneficiaries, if there’s one thing Shirley’s as passionate about as volunteering, it might be blood donation. A blood donor herself, her face lights up when she talks about giving blood. “It’s like, why not,” she said, pounding her fist on the table in front of her. “People say ‘I don’t know, I don’t like needles.’ You know what! It only takes less than 60 minutes.”

Shirley makes it a point to share her passion for volunteering with her son, daughter-in-law, three grandchildren and three (soon to be four) great-grandchildren. And after a quarter of a century with Bloodworks, she’s inspired many others to be a little more giving as well. After all, why not?

You can make a lasting impact in the community with the gift of time. To learn more and apply to be a Bloodworks volunteer, visit our website.

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